As you may or may not know I have mentioned that my brother has been experiencing some symptoms similar to mine like numb fingers and hand, numbness in the cheek and tongue and headaches.  This has been going on since April of this year.  We were finally able to have his MRI/MRA done at UVA in Charlottesville and we are awaiting Dr. Steinberg's opinion and diagnosis if any.  

Today the doctor who had the MRI/MRA ordered called my brother and the doctor told him that there were blood vessels forming at the base of the skull that look like moyamoya vessels.  The doctor wants to admit him to run some more tests (more specifically, the angiogram).  It looks like he will be admitted tomorrow and will have those tests run if they can get him a room.  Right now he is on a waiting list.  The angiogram, will of course confirm if he has moyamoya.  He's only been experiencing symptoms on the left side....so maybe it will only be on one side.  

Please keep Shane and my family in your prayers as we have to possibly go through this all over again.  I will try to keep everyone up to date as best as I can.  

Michelle

Michelle - I just realized that you are the same Michelle that welcomed me to the website a earlier today.  I am so sorry to hear about your brother, Shane, but I guess it was timely that I asked you about my son.  You are both on my heart
Love, Cass

Michelle,

I'm so sad to hear the news about Shane, but grateful that because of your own experience, your family did not wait in having him tested.  As we all know that MM is not a disease one can just "sit, wait and see" what should be done next.  

I guess the next step is hope that they will be able to do an angiogram.  Are patients usually admitted for this procedure? (Since my surgery was an "emergency" one, I was already admitted to the hospital and had my angiogram only hours before my surgery).

It was also great to hear that Shane's doctor actually knew what MM was. :D  I'm glad he's being taken care of by a proactive doctor.  I hope you hear back from Dr. Steinberg soon with his opinion.  

You and Shane will be in our thoughts, [smiley=heart.gif]s and prayers.  Please let Shane know we're thinking of him!  You're a survivor and also a great inspiration!  ;)

Take care,
Shan

Michelle/Shane:

I'll be thinking of you - keep your chin up.  I always believe everything works out at the end of the day.  :)

Keep us updated.  

Lots of hugs,
Trina

[smiley=hug.gif]

Michelle and Shane,

Had to make a post, even though I spoke with both of you on the phone today.  I know what a blow this news is, but also know that you'll do your best to keep your thoughts on the "upside".  Like I said, I'm glad it's MM and not something terrible that can't be treated.  You've also got the best doctor in the world (IMO), who will take wonderful care of you, Shane.  So many positives!  Oh, and how could I forget . . . you've got your California family to keep you on the straight and narrow!  Together, WE'LL get through this!  

Love you both,

Jill, Campbell and Tara  

Michelle-
Thinking of you and Shane and your wonderful mother!  You will all get through this with our love and support.  I continually have the "fear" of MM progressing to my other side but then I tell myself, at least I "know the ropes".  This is true for Shane...at least we know the steps to take and what wonderful help and knowledge is available to him.  I'll be anxious to hear what Dr. Steinberg thinks.  Please give Shane a big hug for me.  You are all in my prayers.
Chelsie

Michelle-

I am so sorry to hear that Shane has to go through all this and he might have MM too. I hope that maybe its not but atleast if it is he will know what to expect and we will all be here to help him through. Let him know i will be thingking if him this week during test. You will both be in my thoughts!!! Keep us updated.

Christy

Michelle,

I was soooo hoping Shane did not have moyamoya too.

I wish I could be there for both of you.

I know it's easier said than done, but keep your chin up.
I will keep you and Shane and your family in my thoughts and prayers through this.

Let me know as soon as you find out the results of Shane's angiogram or if you find out sooner.  I'm really glad Dr. Steinberg is looking at the films.  You know you are in good hands. If there is anything I can do, you know I'm here for you.

Love and hugs, [smiley=hug.gif]

Lore and Kevin (Cubbie)  

Hey Michelle -

Well, Shane are definitely in good hands!  Have confort in the fact that you are catching this early.  I'm sorry Shane may have MM too...but, as I said, he is in the right hands!  Good luck - he will be in my thoughts and prayers.

-Shari

Hi Michelle,

Just to let you know you and Shane are being thought of way over in Australia. Thoughts and prayers are with you.

Shan: When I had my angiograms done I was admitted as a day patient, as you have to lie flat on your back for most of the day after the angiogram is done - they raise you up very slowly over a matter of about 4 or 5 hours until you can sit straight up in bed - something to do with taking it easy because the femoral artery can bleed you to death if you don't!! I don't know if it is done differently in America but that was how I experienced it.
I know from this website that there is a short angio, where you are not incapacitated for most of the day, but I haven't needed to have any more angios recently as my doc has given me the all clear and only wants to see me if symptoms return
Moira

Michelle & Shane,

Howdy friend, yes you will be in my prayers. Don't worry it's all going to be all right. We are all in this together guy, just be positive and like Jill said THERE IS A TREATMENT. Also Michelle is the greatest example. Keep us posted and you are already ahead of the game!

With best regards,
itsme

Michelle and Shane,
 After we spoke on the phone I could sense how nervous you both are.  However the positive attitude you both posess will get us through this thing.  Remember Shane that if in fact you do have this, you have detected it early.  That is got to be a huge plus.  So get to the Dr. as he calls and let's see what the diagnosis is.  You are both very close to our hearts.  Rest assured that everyone here is pulling for the best.  And Shane it's great to hear you QUIT smoking.  Stay with it!

                           Ron ,Lisa and Mark Rowland

Just another update on my brother.  We still haven't heard anything yet either from UVA or Dr. Steinberg.  I did get an email from Dr. Steinberg saying they would review his films and get back to us as soon as possible.  As soon as we know something more definitive, we will let you all know.  

Thanks to everyone for the well wished, positive thoughts, and prayers.  You all are amazing people.  :)

Michelle & Shane

It looks like my brother will NOT be admitted to the hospital after all.  They will still do the angiogram, but as an outpatient.  I think that is better anyway IMO.  Why stay overnight if that is all they are going to do at this point.  No word yet though as to when that is going to be.  I will let everyone know when I hear though.  

Michelle

Michelle and Shane,

I'm glad too that Shane does not have to be admitted if they are just doing an angiogram.  Keep us posted as we are anxious to know how Shane is doing and how the angio turns out.  Shane is such a sweetheart!! Just like you Michelle.

You know, I was simply amazed when I heard that Shane possibly has MM since the odds of a sibling getting MM are less than 10%. With those odds, laying all jokes aside,  [smiley=laugh.gif] Shane, if you do have MM, I believe you should play the lottery. Keep your chin up and stay strong.  You have been through this before and as your message says "God will never give you more than you can handle".  

You both are constantly in our thoughts and prayers.

Big hugs to you both,

Lore and Kevin (Cubbie)

You know, Lore makes a good point about the lottery!  I can think of exactly what could be done with the winnings, Michelle . . . . .

I'm sorry you're at the mercy of the hospital's scheduling.  The waiting is almost worse than anything . . . hard to formulate a plan of action when you don't know where you're headed . . . yuck!  Let loose, the imagination can sometimes be a terrible thing.  Well, know that you're in our thoughts and prayers, and we'll be anxiously waiting for an update.  Hope you can remain calm over the weekend.  Talk to you both soon!

Hugs from your family out west,
Jill  

Just another update....

My brother has his angiogram at UVA on Wednesday.  Finally....we have a date!!!  :)

Michelle

Just another update.......

It has been confirmed by Dr. Steinberg that Shane has bilateral moyamoya.  Apparently it's much worse on the right side, which is what we figured since he isn't even having symptoms on the right side of his body.  Shane has to do an angiogram and Xenon and then surgery on his right side at this point.  Once those studies are completed, Dr. Steinberg will make a decision on whether or not they need to do surgery on his left side.  At this point, they are just watching the left side.  

It turns out that they do take Shane's insurance which is great to hear and one obstacle that we have hurdled.  So....it looks like one year later, we will be taking a trip to California again.  Deja vu I'd say.  

Lore, I think Shane is taking your advice and he's going to play in a Texas Hold'em tournament at a friend's house this weekend.  It's not the lottery, but hopefully, he'll bring back lots of money!!!  :)

I know things will be just fine and Shane will do well with the surgery(ies).  He's a little nervous, but I think less so since he saw me get through them.  And hopefully, by the grace of God, he will not have as many problems/complications as I did.  :)

Michelle

Michelle and Shane,

I am sitting here with my mouth hanging open. I simply can't (don't want to) believe it. What did Dr. Steinberg say about the sibling odds? I'll bet this is extremely unusual given it is less than 10%.  

I'm so glad Shane's insurance is not an obstacle in Shane getting treated at Stanford.  You and I know you are in good hands Shane and I know you will do well.  Like I said, I'm still in schock. It looks like you have caught this soon which is a plus in itself.  

Shane, I expect to hear that you won BIG at Texas hold em poker.

You two keep me informed about the trip to Stanford, surgery(s) etc.  I want to know you guys are okay.  You know you can call me and talk anytime. You also know Jill will be with you at Stanford. Isn't it great to have her there! What a comfort for both of you.  I wish I could be there with you too.

You both are in my thoughts daily and will continue to keep you in my thoughts and prayers. If I can do anything for you please don't hesitate to let me know.

I've been having slight headaches and I never get headaches.  I'm tempted to run and get an angio - like right this minute! No Kidding!

Love and Hugs,

Lore and Kevin (Cubbie)

Hi Michelle,

I really don't know what I could say except for the fact that I know that Shane will do just fine.  It just breaks my  [smiley=heart.gif] when I hear of someone else falling victim to this so called "rare" disease.  He has a great support team behind him, so I know that he'll do well!  

Wow, like Lore said, reading about you and Shane, and then about Laura and her twin sister really raises eyebrows about the <10% odds of siblings having MM.  More research about MM needs to be done...now!

Michelle, I know I'm waaayy over here across the Pacific, but if there is anything I can do for you or Shane, please let me know.  I'm serious, just let me know.  How about some goodies/snacks?  A hula girl?  Ooops!  [smiley=oops.gif]    Anyway, yes, Jill and her family is truly a blessing to be located so near to Stanford, and bless their  [smiley=heart.gif]s for being there to support others.  I know I surely could've used her and her family's support when I underwent my surgery!  ;)  Jill, you and your family are a God sent!

[smiley=hug.gif]
Take care,
Shan

Michelle and Shane,

I'm with Lore . . . even though we all knew this was a possibility, none of us wanted to hear the actual words of Shane having MM.  Your call yesterday brought tears to our household - as I told you, Tara's eyes got big and started shedding tears, then her face scrunched up.  There were a few smiles, like when I heard Campbell talking to Shane on the phone, telling him it was a lousy excuse to come out and go to the Santa Cruz boardwalk (male sensitivity coming through, I think!).  And, it does mean we get to see you sooner than we planned . . . that's wonderful news!

You both know we'll keep a bedside vigil with and for you, Shane.  Though the surgery prospect is frightening, you know the ropes, and certainly know you're in the best possible hands with Dr. S!  I watched you stand by Michelle as she went through surgery, and you'll get nothing less.  

Faith and hope won't allow us to think anything other than the fact that things will be just fine!  

Shane - good luck with your tournament this weekend!  I hope you hit it big!  
Lore - pick your jaw up!  It's not pretty sitting on the ground, and you need it to talk (LOL!)  Kidding aside, I'm already saying prayers that your headaches go away . . . and quickly!  

Lots and lots of love, you guys!

Jill    

Michelle/Shane:

I'm shocked.  Like Lore, I am sitting here with my jaw on the ground.  I really didn't think Shane would be diagnosed with this.  Please keep me updated on when the surgeries will happen.  My follow ups are tentatively scheduled and I would love to be there physically to support you both as you go through this.  If not, I will definitely be there in spirit.  Please let me know if there is anything I can do.  Feel free to PM, email, call...

I am sure my mother will be shocked as well when I tell her.  She still talks about how Shane came over while she was waiting during my first surgery and asked ever so gently 'how are YOU doing'.  My cousin talks about how he said no thank you to coffee but Shane brought him some anyway.  

I too believe that Shane will be fine.  He has the best doctors, and the best sister at his side and of course, us moymoya family to support him through it all.  

I'll be thinking of you -- please, let's talk soon.  Good luck at the tournament Shane!

Lots of love,
Trina

You will each be in my thoughts, prayers and close to my heart. Tons of luck and well wishes, Shane. Michelle and Shane, I am truely sorry that you each have to go through this again, albeit different roles.
Take much care, (both of you)
Stephanie

Michelle -

I'm so sorry to hear that Shane has MM.  It's good to know that he has your guidance and experiences to guide him through this process.  I wish I could be there to support you both, but please know that I will be there in spirit...sending prayers (and  [smiley=hug.gif])your way!

-Shari

Thanks everyone for the well wishes.  It's really hard to believe.  But I know that we will both get through this with the help of our family, friends, all of you all and God.  Thanks for all of the support!!

Michelle

Just wanted to post an update on my brother.  He will be heading out to sunny California on November 1st and starts his testing on November 3rd and 4th and then 7th and 8th.  His surgery is scheduled for November 9th.  It is unknown whether he will have a second surgery until his testing is finished.  At this point, they are just going to watch the other side.  

Anyway.....just keep Shane in your prayers and thoughts.  :)  Oh....any of you guys that like the Xenon test....maybe you can give him words of encouragement.  I think he's a little nervous about this one.  Tell him how much you all like it.  :)

Michelle

Hi Michelle,

Thanks for the update on Shane.  Both you and Shane will be in our thoughts and prayers.

As far as Xenon Gas goes, well let me tell you that it is not just DJ and Kevin who love the Xenon gas it is also Linda and Brian.  I suspect if I took an actual survey, it would be a lot more.  Tell Shane it is a get high quick and only 30 seconds.  So if you like it, 30 seconds is not enough. [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

The bright side, possibly Shane only has to have one side done.

Also, you will have Jill and Campbell and Tara with you which will be great comfort and you know, you don't have to go through this alone as you have your entire moyamoya family.

I will be checking up on Shane while you are at Stanford.  If you get a chance, e-mail us so we know how things are going.

Be sure and say Hi to the Stanford gang for us.

Hugs, [smiley=hug.gif]

Lore and Kevin (Cubbie)

Michelle,

Shane will definitely continue to be in our thoughts and prayers.  ;;D  Please let him know that we are all thinking of him...and you too!  [smiley=hug.gif]

Xenon scan?  From what I've read in previous posts, sounds like something I'd like to do too!  A good person he should speak to would be Kevin (Cubbie)... ;) hee hee.

Take care,
Shan

p.s.  I mailed Shane's package today.... ;)

Hey Michelle/Shane:

I am confident that Shane will be just fine; hope you got my e-mails.  I'll be thinking of you both, and checking up while you are at Stanford.  As Lore said, you'll have all of our support and we'll be there in spirit, if not physically.  As I mentioned before, I'll be there starting the 17th for my follow up so hopefully we can meet up.  Let me know if you get a chance.  I am sure everything will work out great.  Regardless, keep us all posted, if you get time, while you are out there.  

As far as the Xenon, everyone keeps saying how much fun it is or how awful it is.  I can't decide which team to be on.  I think I must be sleeping through the whole thing.  I don't remember most of it while I was doing it.  Usually during those tests, I've got other things drifting into my mind, like 'hey, that doc is cute, wonder if he's taken, darn, he's got a wedding ring on, hey, there's another one who just walked by, wonder if we should go to wendy's or mcdonald's for lunch...' [smiley=crackup.gif]

:)
Trina

Oh Trina, you're hysterical!!!!!!!!!  Everyone should be thinking things like that to distract them during testing!  Well, Dr. Dodd's at the top of my list . . . too bad he's not officially part of neurosurgery anymore!  I'm sure Shane will find some sweet young thing to hold his attention!

We're so looking forward to seeing you in just a few weeks!  With your great attitude, I know your testing will go just fine!

Big hugs,
Jill

Seachelles wrote on Sep 23^rd, 2005 at 9:04am:

It looks like my brother will NOT be admitted to the hospital after all.  They will still do the angiogram, but as an outpatient.  I think that is better anyway IMO.  Why stay overnight if that is all they are going to do at this point.  No word yet though as to when that is going to be.  I will let everyone know when I hear though.   Michelle

Michelle and Shane,
My heart and prayers go out to both of you as you go through this ordeal.  

You made mention in a previous post in this thread, that the Dr. saw possibilities in the BASE of his brain?  Does that mean that he was looking at the brain stem as opposed to the left or right side?

May all of his tests go fast and without trouble.  

-= Dewski =-

(P.S. - The Mikeman's middle name is Shane.   ;;D )

Hi Michelle....

....am remembering a post of Shane calling Jill when you were not doing so well..he was there for you and I know you will do the same.   As rare MM is...rarer when another family member has it, too....but as you already know you got ALL of our support, prayers nonstop that all his tests go well and that he breezes through surgery and of course in great hands.

keeping you guys in my prayers.

super tight hugs,  carol

Hi Michelle:

We are so sorry about your brother. Brain surgeries are just not much fun. Brian says to let Shane know that xenon is the best!!! We will have our whole church praying this weekend. Before you know it, Shane will be celebrating his 1 year post-op anniversay. He's in good hands, the Lord's and Steinberg's.

Please keep us informed..................Kathy